Commentary: People with disabilities have diverse opinions on end-of-life care
Delaware lawmakers will convene on Jan. 11 to continue debate on urgent legislation for mentally capable, terminally ill adults that would give them the option of medical aid in dying to peacefully end their suffering if it becomes unbearable.
I served on the governor’s Council for Health Promotion and Disease Prevention as the sole voice of the disability community. Some people who claim to represent the disability community vehemently oppose this bill, the Ron Silverio/Heather Block End of Life Options Law (House Bill 140). They do not speak for me. They seem consumed by unfounded fear that this option will somehow be imposed on them against their will.
I have repeatedly testified in support of the bill. Here’s why.
My life journey has transformed me from being an exceptional athlete to progressing into quadriplegia, as a result of a diagnosis of progressive multiple sclerosis in 1995. The can-do spirit I had pre-disability continues to live within me post-disability, as I found ways to overcome its challenges and continue my love for life and helping people but just doing it differently.
Because I am now a part of the disability community, I see things differently and see the many inequities and health disparities that exist. Not wanting to take a back seat to my disability, my friend and I co-founded Yes U Can USA in 2003 to help increase inclusion and access to recreation and physical fitness opportunities for people with disabilities and limited mobility. This program positively impacts every participant’s life, as they realize they are able to regain control of things that they did not think they could. The psychological benefits are “liberating,” oftentimes outweighing the physical benefits. It’s absolutely wonderful to witness this transformation.
Ironically, this program also saved my life, simply because I found “purpose” again. I received the same benefits as everyone else and realized that I was also able to take charge of the things that I could and accept the things that I could not. I was able to direct my life the way I needed.
But now, at age 66, I realize more every day that I will not live forever, so I need to plan. It’s important to me to maintain autonomy over my personal health care decisions at the end of my life, just as I have throughout my life.
What opponents do not understand — or refuse to acknowledge — about medical aid in dying is that they have the option to decide to use it or not use it, and these laws, as well as Delaware’s legislation, have a dozen safeguards to prevent misuse.
In fact, the recently retired, longtime executive director of Disability Rights Oregon (DRO), which has federal authority to act as a watchdog for people with disabilities and request confidential records, confirmed in a 2019 letter that “DRO has never to my knowledge received a complaint that a person with disabilities was coerced or being coerced to make use of the (1994 Oregon Death With Dignity) Act.”
A 2020 GBAO poll showed that 72% of Delaware voters support medical aid in dying, with majority support spanning the geographic, political and racial spectrum. While the poll did not include a breakdown of support among people with disabilities, a Purple Insights poll in neighboring New Jersey showed that 63% of voters with disabilities support medical aid in dying, nearly the same support level for all state voters (62%).
My sister, Cindy George, died a horrific death from cancer in 2015. I do not want to suffer a prolonged death, full of unnecessary pain and mental anguish. When I become terminally ill, I want the option to decide what is right for me. I fiercely value and protect my independence and cannot imagine being unable to make my own decision.
We should have that right to direct our life to the end of life. I certainly did not take charge of my life to give up my autonomy to someone else during the last months of my life.
I want Delaware legislators to respect their constituents by trusting them to decide, based on their own values and circumstances, their end-of-life care journey. For those who do not support the option, they would continue with the same right to decline the option. But for those who are suffering and near life’s end, it can provide the peace and comfort my sister sadly lacked.
Vickie George lives in Wilmington.
